antiquity
08-19-2002, 01:51 PM
Reversing ravages of multiple sclerosis
An experimental treatment gives some movement, and hope, back to an Ottawa man. Sharon Kirkey reports.Â*
Sharon Kirkey
The Ottawa Citizen
Monday, August 19, 2002ADVERTISEMENT
By the time John Chafe walked the short distance from work to his neurologist's office, he was exhausted, and so off balance he looked like a drunk. For months his gait had been getting steadily worse; more and more he caught himself weaving "all over the place."
"You should get a cane," his neurologist suggested.
Mr. Chafe was horrified. "Canes are for disabled people," he shot back.
John Chafe was 29. For five years the former downhill ski instructor had been living with multiple sclerosis, a disease that was slowly and deliberately eating away his myelin, the fatty, protective sheath that wraps around nerves in the brain and spinal cord. In MS, misfiring immune cells essentially punch holes into that crucial insulation, so that impulses can't travel properly along the nerves to and from the brain and spinal cord.
The result, in Mr. Chafe's case, was increasingly impaired mobility. Ever shorter distances would leave him weaving when he walked, especially after lunch, because MS symptoms tend to get worse as the day goes on.
Mr. Chafe was working with the Royal Bank in Toronto. "Think of the aesthetics," his neurologist told him. What if people thought he was drinking at lunch?
Mr. Chafe knows a woman with MS who worked for the federal government. "They thought she was an alcoholic."
Mr. Chafe got a cane. At first he used it only when he was tired. Gradually, he relied on it more and more.
Today, four years later, a black cane sits collapsed in four on the glass coffee table inside his Hunt Club area home. Mr. Chafe still uses it, but his walking and balance are slowly improving.
Earlier this year, he made it from the parking lot at the Ottawa Hospital to the MS clinic unaided.
The number of good days is, finally, beginning to even out with the bad.
Most importantly, seven months after undergoing a bold new experiment, MRI scans reveal no new MS lesions in Mr. Chafe's brain.
He is the second patient in Canada to undergo a bone marrow transplant to try to replace the immune cells that are believed to be attacking his myelin with healthy ones.
The risky procedure is part of a multi-million-dollar trial co-led by Dr. Mark Freedman, an Ottawa Hospital neurologist whose research may hold out the best hope to MS patients faced with a chronic, progressive worsening of their disease, and who is considering leaving the city over the fallout of hospital restructuring.
If Yale University succeeds in luring the respected brain doctor away, it could be one of the most serious "brain drain" losses to hit not just the city, but also the country.
Almost two years ago, John Chafe walked into Dr. Freedman's MS clinic at the Ottawa Hospital and asked about the experimental bone marrow trial he'd been reading about on the Internet. "He looked at me and said, 'You'd be perfect.' "
Mr. Chafe was young, but each day he was suffering more disability. He was also classified an "interferon failure": He was no longer responding to one of the standard treatments for MS. In every way, he fit the criteria for a "poor prognostic."
It began with his eyes.
One day, he woke up cross-eyed. A doctor in Thunder Bay, where Mr. Chafe was living at the time, dismissed it as a flu bug. He bought an eye patch, and when the symptoms disappeared about a week later, Mr. Chafe assumed that, whatever he'd had, he was over it.
Then he started weaving when he walked.
He saw a second doctor and told him a friend had mentioned the possibility of MS; this time, an urgent MRI was ordered. When the brain scan revealed telltale clumps of MS plaque lesions, Mr. Chafe called his parents back home in Ottawa.
Two months later, he lay on an operating table while Dr. Freedman inserted a long, thin hollow needle into the space between the bones in his lower spine, withdrawing a few teaspoons of cerebral spinal fluid. Doctors examine the clear fluid for signs of elevated levels of MS-related antibodies as well as proteins produced by the breakdown of myelin.
The lumbar puncture, or spinal tap confirmed what the MRI was showing.
Mr. Chafe agreed to join an experimental drug trial. But the drug, oral myelin, didn't work, and from then on "I just slowly went downhill."
In addition to his full-time job at the bank, Mr. Chafe had opened an indoor rock-climbing gym in Thunder Bay. "I remember walking to the door of the gym and I had to lean on the walls." At work, he was finding it harder to get up to greet clients. At one point he had to be hospitalized and given intravenous steroids. He moved back home to Ottawa and switched careers after taking a computer programming course.
The MS "exacerbations" gradually grew worse, and came more often. He saw the bone marrow experiment as his only option. "When I looked seven, eight years into the future, what I saw was just progressive worsening. Being bed-ridden, or in a wheelchair."
He had the transplant in December. First, his immune system was destroyed with powerful chemotherapy-like drugs; then, doctors infused him with his own stem cells that had been collected earlier and purified of the offending cells believed responsible for triggering the MS. The hope is that the stem cells would generate new immune cells that won't attack myelin.
Mr. Chafe had shaved his head in anticipation of the chemo, but even then he woke up with his pillow coated in stubble; his goatee came away in clumps. He felt "like death warmed over. I started feeling really down. I had no energy, I couldn't read." His father, Warren, spent many nights on a cot next to his son's bed in the hospital, where John stayed for 21 days. He required so many drugs, doctors installed a Hickman catheter, an IV line directly into Mr. Chafe's chest. At one point, he was on liquid morphine because he couldn't swallow. He was finally sent home Christmas Eve.
Slowly, his immune cell counts returned but, "like MS is a gradual slide down, the climb back up has been slow.
"My mobility is still bad, but not as bad as it was two months ago. I still use the cane most of the time, but I'm starting to get away from it."
For the first time in a long time, he can make plans in advance.
Still, he's noticed changes in his short-term memory; it's not as sharp as it once was. And, as he becomes more fatigued later in the interview, his speech becomes more laboured, choppy.
"The whole goal of the study was to stop progression of MS. There's even a chance we may re-myelinate over time," Mr. Chafe says. Recent studies have found that stem cells from the bone marrow are capable of reaching the brain. Most significantly, scientists have found them in the cells that make myelin.
"A lot of my friends remember me as the active John, and now they see me as the disabled John, and they see a big difference, but they've also seen the progression," Mr. Chafe says. "People who meet me now just meet me as John with MS.
"I want to walk into a room and have people see me, and not my cane," Mr. Chafe says, as Boone, his golden retriever, rests his head on his lap. "I want to be 'normal.' "
An experimental treatment gives some movement, and hope, back to an Ottawa man. Sharon Kirkey reports.Â*
Sharon Kirkey
The Ottawa Citizen
Monday, August 19, 2002ADVERTISEMENT
By the time John Chafe walked the short distance from work to his neurologist's office, he was exhausted, and so off balance he looked like a drunk. For months his gait had been getting steadily worse; more and more he caught himself weaving "all over the place."
"You should get a cane," his neurologist suggested.
Mr. Chafe was horrified. "Canes are for disabled people," he shot back.
John Chafe was 29. For five years the former downhill ski instructor had been living with multiple sclerosis, a disease that was slowly and deliberately eating away his myelin, the fatty, protective sheath that wraps around nerves in the brain and spinal cord. In MS, misfiring immune cells essentially punch holes into that crucial insulation, so that impulses can't travel properly along the nerves to and from the brain and spinal cord.
The result, in Mr. Chafe's case, was increasingly impaired mobility. Ever shorter distances would leave him weaving when he walked, especially after lunch, because MS symptoms tend to get worse as the day goes on.
Mr. Chafe was working with the Royal Bank in Toronto. "Think of the aesthetics," his neurologist told him. What if people thought he was drinking at lunch?
Mr. Chafe knows a woman with MS who worked for the federal government. "They thought she was an alcoholic."
Mr. Chafe got a cane. At first he used it only when he was tired. Gradually, he relied on it more and more.
Today, four years later, a black cane sits collapsed in four on the glass coffee table inside his Hunt Club area home. Mr. Chafe still uses it, but his walking and balance are slowly improving.
Earlier this year, he made it from the parking lot at the Ottawa Hospital to the MS clinic unaided.
The number of good days is, finally, beginning to even out with the bad.
Most importantly, seven months after undergoing a bold new experiment, MRI scans reveal no new MS lesions in Mr. Chafe's brain.
He is the second patient in Canada to undergo a bone marrow transplant to try to replace the immune cells that are believed to be attacking his myelin with healthy ones.
The risky procedure is part of a multi-million-dollar trial co-led by Dr. Mark Freedman, an Ottawa Hospital neurologist whose research may hold out the best hope to MS patients faced with a chronic, progressive worsening of their disease, and who is considering leaving the city over the fallout of hospital restructuring.
If Yale University succeeds in luring the respected brain doctor away, it could be one of the most serious "brain drain" losses to hit not just the city, but also the country.
Almost two years ago, John Chafe walked into Dr. Freedman's MS clinic at the Ottawa Hospital and asked about the experimental bone marrow trial he'd been reading about on the Internet. "He looked at me and said, 'You'd be perfect.' "
Mr. Chafe was young, but each day he was suffering more disability. He was also classified an "interferon failure": He was no longer responding to one of the standard treatments for MS. In every way, he fit the criteria for a "poor prognostic."
It began with his eyes.
One day, he woke up cross-eyed. A doctor in Thunder Bay, where Mr. Chafe was living at the time, dismissed it as a flu bug. He bought an eye patch, and when the symptoms disappeared about a week later, Mr. Chafe assumed that, whatever he'd had, he was over it.
Then he started weaving when he walked.
He saw a second doctor and told him a friend had mentioned the possibility of MS; this time, an urgent MRI was ordered. When the brain scan revealed telltale clumps of MS plaque lesions, Mr. Chafe called his parents back home in Ottawa.
Two months later, he lay on an operating table while Dr. Freedman inserted a long, thin hollow needle into the space between the bones in his lower spine, withdrawing a few teaspoons of cerebral spinal fluid. Doctors examine the clear fluid for signs of elevated levels of MS-related antibodies as well as proteins produced by the breakdown of myelin.
The lumbar puncture, or spinal tap confirmed what the MRI was showing.
Mr. Chafe agreed to join an experimental drug trial. But the drug, oral myelin, didn't work, and from then on "I just slowly went downhill."
In addition to his full-time job at the bank, Mr. Chafe had opened an indoor rock-climbing gym in Thunder Bay. "I remember walking to the door of the gym and I had to lean on the walls." At work, he was finding it harder to get up to greet clients. At one point he had to be hospitalized and given intravenous steroids. He moved back home to Ottawa and switched careers after taking a computer programming course.
The MS "exacerbations" gradually grew worse, and came more often. He saw the bone marrow experiment as his only option. "When I looked seven, eight years into the future, what I saw was just progressive worsening. Being bed-ridden, or in a wheelchair."
He had the transplant in December. First, his immune system was destroyed with powerful chemotherapy-like drugs; then, doctors infused him with his own stem cells that had been collected earlier and purified of the offending cells believed responsible for triggering the MS. The hope is that the stem cells would generate new immune cells that won't attack myelin.
Mr. Chafe had shaved his head in anticipation of the chemo, but even then he woke up with his pillow coated in stubble; his goatee came away in clumps. He felt "like death warmed over. I started feeling really down. I had no energy, I couldn't read." His father, Warren, spent many nights on a cot next to his son's bed in the hospital, where John stayed for 21 days. He required so many drugs, doctors installed a Hickman catheter, an IV line directly into Mr. Chafe's chest. At one point, he was on liquid morphine because he couldn't swallow. He was finally sent home Christmas Eve.
Slowly, his immune cell counts returned but, "like MS is a gradual slide down, the climb back up has been slow.
"My mobility is still bad, but not as bad as it was two months ago. I still use the cane most of the time, but I'm starting to get away from it."
For the first time in a long time, he can make plans in advance.
Still, he's noticed changes in his short-term memory; it's not as sharp as it once was. And, as he becomes more fatigued later in the interview, his speech becomes more laboured, choppy.
"The whole goal of the study was to stop progression of MS. There's even a chance we may re-myelinate over time," Mr. Chafe says. Recent studies have found that stem cells from the bone marrow are capable of reaching the brain. Most significantly, scientists have found them in the cells that make myelin.
"A lot of my friends remember me as the active John, and now they see me as the disabled John, and they see a big difference, but they've also seen the progression," Mr. Chafe says. "People who meet me now just meet me as John with MS.
"I want to walk into a room and have people see me, and not my cane," Mr. Chafe says, as Boone, his golden retriever, rests his head on his lap. "I want to be 'normal.' "